As we drove home from a long, yet productive day at Cincinnati Children’s, I read this update from Tracy. I just sat in the front seat trying to process & come to grasp with the possibility of Gods plans not matching with my own, yet continuing in prayer knowing (like Tracy also says) that God is able to heal. Is it a greater Faith required to accept & believe healing or to accept that God could choose to take a sweet one home? Either way, I cannot imagine this great heart ache Tracy & her husband are facing. I’ve personally been praying Kya’s heart would grow in a great love for her Mommy…since they have had very little time together to build trust.
Parts if this update made me smile & others made me sob. I rest tonight in the truth that Gods ways are much bigger than my ways, His thoughts much bigger than mine. Kya’s life has great purpose. As I head to bed tonight set my mind on our merciful Father holding Kya, her mom, dad and brothers. They are His…and He has heard our prayers on their behalf.
Thank you all for caring, and praying.
From Kya’s Mom-Tracy :
It’s Monday afternoon, where has the time gone??? The last couple of days have been a blur and I think that is pretty much how life is going to be for us for the time being. Thursday afternoon we packed up to head down to McChord Air Force Base for Sgt. Loef’s graduation ceremony. Traffic was horrible but we spotted pretty much every single punch bug on the road. Playing punch bug kept the boys very busy and kept Carlton and I on the road of having our patience tested as it seems like none of our boys can say the word punch bug at a normal volume level. We finally arrived at McChord and the boys and I got ready for bed as Carlton dressed and hurried out the door to the graduation ceremony. He decided to wear his Air Force dress uniform which always brings about some laughs between the two of us as the uniform itself is just a very restrictive suit. We shared a few laughs about someone having their eye put out if Carlton made a sudden move causing his cummerbund to fly off and how it could possibly seriously injure someone if the little button hole emblem popped off his jacket, a person could have the Air Force logo permanently implanted on their face. But I am glad to announce no injuries came as a result.
The next morning, my husband who can’t seem to sleep past 4 am, got up early and started getting ready in the dark. I finally woke up later like a normal person, around 8 am, and went to take my shower which revealed that my toothbrush was at the top of the shower door. This is not where I put my toothbrush, but it is where Carlton puts his toothbrush. I don’t think I need to elaborate anymore here, let’s just say that I have a new toothbrush now. We gathered the boys and headed out to Seattle for our Brown Bear visit. Again, the traffic was horrible, and again we had to sit and listen as the boys yelled as loud as they could at every passing punch bug on the road. Playing punch bug as a kid use to be easy but is now very difficult with all the mini coopers and smart cars out there. You really have to pay attention
We finally made it to Children’s and after daddy saw Kya for a few minutes, I headed back. Carlton took the boys and kept them busy so I could have a couple of hours with Kya. This was the first time that we have physically seen her in a couple of weeks and the first time that she has been fully awake while we were there. Kya has now been in the hospital for over a month. We have been able to skype several times with her over the past few weeks but it’s just not the same. I am thinking of getting an iPad we can keep in her room so we can Skype with her at any time and not have to wait for an available iPad from the resource center.
When I came in the room, Kya looked at me like, wow, she looks a lot like my mom but I’m sure she’s just a computer image. It took Kya a second to realize it was me and that I was physically there. But once she did, she started to try and crawl out of her crib. I wanted to just pick her up and take her away for good. I just held on to her in a “bear” hug while the nurse worked fast to try and make it possible for me to actually pick her up and hold her on my lap. Kya was climbing on top of me trying to get out of the crib. After a few failed attempts and figuring out the best way to untangle Kya from all the wires, we finally got the situation handled and I was at last able to hold my brown bear on my lap. Kya has always been a lap dog and so for her to be able to sit on my lap, it was just a taste of heaven for the both of us. I hit me that I have not been able to hold her for the last month, only problem now was I did not want to let her go, at all.
While holding her, I looked down at one point and realized that the pillow Kya was sitting on was covered in green goo. I quickly called in the nurse as I thought Kya had just had a blow out in her diaper. Turns out that it was not a poo at all, but her feeding tube had a little suction effect take place when the nurse unhooked it and it pulled up some stomach bile and basically leaked it all over the pillow. I was very glad at that point that I had remembered to put on one of the hospital gowns before I picked up Kya.
While the nurses were trying to change out Kya and clean her so we could go back to our snuggle session, one of the nurses put a set of blocks in front of Kya so she could play with them. These kind of blocks are some of Kya’s favorites to play with and she has a set at home too. So the nurse was kind of shocked when he would give a block to Kya and she just threw it down. The whole time she was throwing the blocks, she was gazing directly at me. In the past, when I am at the hospital with Kya, she is very quick to let me know how much she hates it and how angry she is at me for bringing her there. I am very use to getting the death stare from her. But this time I was a bit confused as I was not getting the death stare at all, but instead a very intense gaze. I finally realized what was taking place. God has answered one of my prayer requests and Kya’s emotional heart is healing a bit. Kya looked at the nurse as if to say, um…are you crazy? You honestly want me to play with blocks when my mom is in the room??? Blocks or mom, duh!!! I told the nurse that I did not think Kya was going to be happy until they were finished with her and I could hold her again and I was right. Kya kept pushing the nurse away and the toys away and was not happy at all until I came back to the side of the bed and just grabbed her up in my arms as quickly as I could.
Some kids are more of the snuggle type than others and Kya is definitely a natural born snuggler. She very easily wraps her little arms around your neck and holds on and is very comfortable in a hug position. I had forgot how much I like to snuggle with her and how easy she makes it because she is such a natural snuggler. I could have held her all day long. We just sat there for the next two hours snuggling, talking, singing, and of course doing girly things like putting on lotion, brushing her hair etc. We also took a few selfies and some video which I was share.
But alas, the two hours was up and Kya was very much ready for her nap time. She started getting fussy and so I placed her back in her crib. The nurse then came in to do some quick stuff on Kya before she dropped off as the nurse did not want to have to wake her from sleeping. So I decided it was a good time to make my exit. I took a deep breath, turned around, and walked out the door to the sound of my baby gal crying in the background. It took every ounce of emotional and physical energy I had to make it down that short hallway and head out of the ICU.
The drive home was very long as the traffic was again very thick. The car was very noisy with the sounds of “PUNCH BUG” sounding every 15 seconds or so. And yet, the car ride was unusually quiet. It was during the ride home that Carlton and I really got a chance to discuss some of what was taking place with Kya, and it was not a good conversation.
Kya’s condition is rapidly deteriorating. I will try to explain some of what is going on with her little body in the hopes that it will answer some questions. While at the hospital, I had the opportunity to chat with the nurse and one of the Dr.’s on the case. I was informed that they are changing the status on Kya from being that of just a heart defect baby to also being a heart failure baby. What this means is that Kya still suffers from having a congenital heart defect, but she is also now suffering from having heart failure.
The heart failure part has come about as a result of the two surgeries and it has a lot to do with Kya’s age. The types of surgeries Kya has had are normally performed on infants and with good results. But Kya’s heart has had 2 ½ years of working wrong. As a result, her heart is very enlarged and as a muscle, it is very stretched and literally out of shape. One of the risks with heart surgery is this, during the surgery, the heart has to be stopped. When the surgery is completed, the heart is then restarted. The risk is that all or some of the heart will not restart resulting in heart failure. This is what Kya is experiencing. After each of her surgeries, the squeeze function part of Kya’s heart has not restarted. That part of her heart has worked and worked so hard to keep her alive for 2 ½ years that when it was stopped and given the chance to rest, it kind of decided that it was too worn out to start back up again.
We knew this would be a risk but we also knew that if we did nothing, she would certainly die from the strain constantly being put on her heart. So basically, Kya still has several heart defects, but now she has heart failure on top of it all. This type of heart failure is causing what is known as hypoxia causing the lack of adequate oxygenated blood getting to the whole of Kya’s body. When I saw Kya, I realized that my daughter who normally has what I call Latte skin, the beautiful perfect mixture of coffee with just enough creamer, was now blue on her extremities and overall very gray. Thus enters in the next problem.
The feeding issue. Kya has always had a very complex anatomy which just does not help the issue and especially in her gut area. After the episode of her feeding tube not being placed in the right spot, I was very hopeful that we would get that error corrected and Kya would start to thrive again. But that is not happening. The Dr. was able to finally get Kya’s tube into the position of an ND tube but when the feeds were turned back on Saturday night, Kya began vomiting and gagging real bad. This continued until Sunday night as they attempted several times to fix the problem. So now the question is being asked if the feeding issue is now switching to being more connected to the heart issue. Here’s what is changing. The issue is now more related to the hypoxia effect where Kya is not getting adequate oxygenated blood to her extremities but also not enough to her organs. Her entire body is basically being starved of O2 as the result of her squeeze function not working. Her tummy is behaving very much like that of a person whose organs are beginning to shut down. And that’s where we are right now. The nurse explained to me that the tummy will shut down first, the kidneys usually go next, and then the brain activity. Unfortunately for Kya, her little body is beginning to go through the shutdown process but in a rapid succession. Just last week, Kya was able to sit up for extended periods of time and play, but now she is very lethargic and just plain ol cranky as she is very tired, but not able to rest.
I wish I had some good news about this whole situation to pass along and trust me, if things change and I do have some good news, I will send it out asap. I am longing for some good news. The one thing I can say in all of this is that if Kya comes out of that hospital having survived this ordeal, it will be because God has willed her to stay alive and no other reason. We are in need of His healing touch on her little heart to awaken it and start it back to life. I am fully aware that He can do this through a possible change in a med or the Doctors coming up with a different plan they haven’t thought of yet. God uses humans to sometimes carry out his healing work in our lives. But right now, we are very aware that the Doctors have exhausted pretty much all of their options and so we are asking God for a miracle or that He will lead the Doctors to the right answer which will save Kya’s life. We do feel that we are being pressed up against time in this whole situation. There’s just no way to tell how long Kya can sustain life at this point unless God intervenes.
I am also aware that God may choose to completely heal Kya by simply taking her to be with Him. Whereas that would be a beautiful picture of how God can heal her, I am a bit of a selfish mom and I am pleading that God will allow us to have some more time with our brown bear while here on earth. I feel like I am stuck between two worlds, the world of faith and hoping for a better outcome, and the world of reality and planning for the worst. It is exhausting and Friday night after coming home from the hospital, Carlton and I just sat in the living room and cried. We could not believe we were at this place.
We are so thankful to all of you who have been holding up our family in prayer during this time. We are so thankful to God for placing us in the midst of friends and family who are taking such an active roll in doing whatever you can to help us. We are thankful for the feeding and spiritual leadership we are receiving from those in our church who are consistently challenging us to not give up hope. So many of you have allowed us to deal with this in a healthy way by allowing us to grieve and have those bad days of exhaustion and tears instead of forcing us to put on happy faces or to push past the grief because of how uncomfortable tough situations in life can really be. I have lived long enough to see grief dealt with well and not so well.
As with age, tragedy can bring on wisdom if you let it. It forces you to prioritize and to see the things that really matter. I absolutely love elderly people because they become one of two things, grumps or grateful. You begin to reflect on all the petty things you allow yourself to get caught up in and you realize that other than knowing the gospel, most of the squabbles we find ourselves in just don’t matter. How many kids you have, do you homeschool or not, work promotions, how others see you or what they say about you, can your kids sit perfectly still in church, are you successful in the home as well as out, do you look the part, are you glamorous, thin, pretty enough etc. I look at the junk that has clouded my life and I just say to myself, I have a daughter fighting for her life. I have three little boys who may again experience the loss of a sibling. Now the questions in my life and the things that matter are changing. They are more like this…am I clinging to the Word and the truth so I don’t falter in my thinking? Am I teaching my children the reality of the gospel and the reality of heaven and hell? Am I living out the gospel not caring what others think because I realize the only opinion of my life that matters is what God thinks of me? Am I not wasting tough times or tragedies because I know God does not waste a single moment in a life? Am I making too much of petty things? Am I complaining too much instead of resting in His peace? Am I trusting that God will use this tough time to bring glory to Him and not answers my way? Those are my questions now. That is where I am resting and thanks to Godly preaching and exhortation, I am being challenged each week to think Biblically about life.
I am including some pics of Brown Bear and will fwd the videos I took of her. I am also including a song that we sang yesterday at church which is one of my favorites. Because God has granted the gift of repentance in my life, I can sing this song with joy…how bout you?
Much love to all of you,